Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, 9609 Medical Center Drive, Bethesda, MD, 20892, USA.
ICF Inc., 9300 Lee Hwy., Fairfax, VA, 22031, USA.
J Cancer Surviv. 2021 Oct;15(5):785-791. doi: 10.1007/s11764-020-00970-z. Epub 2021 Jan 5.
Patient-generated health data (PGHD) can provide information about population-level patterns in health outcomes that patients experience during cancer survivorship. Cancer registries do not collect PGHD as part of routine operations. This study assessed the feasibility of online collection of PGHD to augment cancer registry data.
Cancer survivors who (1) were aged 50 or older, (2) had been diagnosed with breast, prostate, or colorectal cancer, and (3) received their diagnosis within 10 years of the study start date were recruited at four Surveillance, Epidemiology, and End Results (SEER) cancer registry program sites. Each site was required to collect PGHD at baseline and a future time point to assess the feasibility of longitudinal methods. All sites collected data through a survey or questionnaire(s); each site employed unique methods to administer their surveys.
Across the sites, initial recruitment appeared to be the most challenging aspect in establishing a longitudinal cohort from the SEER sampling frame, with participation rates ranging from 3 to 17%. However, once enrolled, the percentage of survivors completing surveys at multiple time points was relatively high, ranging from 48 to 91%.
Augmenting cancer registry data with longitudinally collected PGHD is feasible, although more work is needed to overcome barriers of initial patient recruitment and adoption of online PGHD collection techniques for public health surveillance.
Registry data, including PGHD, can provide the medical community with patient perspectives on treatment effects and quality of life and can offer cancer survivors information about symptom management and advances in research.
患者生成的健康数据（PGHD）可以提供有关癌症患者在生存期间健康结果的人群水平模式的信息。癌症登记处不作为常规操作收集 PGHD。本研究评估了在线收集 PGHD 以补充癌症登记处数据的可行性。
在四个监测、流行病学和结果（SEER）癌症登记计划地点招募了符合以下条件的癌症幸存者：（1）年龄在 50 岁或以上，（2）被诊断患有乳腺癌、前列腺癌或结直肠癌，（3）在研究开始日期的 10 年内接受诊断。每个地点都需要在基线和未来时间点收集 PGHD，以评估纵向方法的可行性。所有地点都通过调查或问卷收集数据；每个地点都采用独特的方法来管理他们的调查。
在各个地点，从 SEER 抽样框架中建立纵向队列似乎最初的招募是最具挑战性的方面，参与率从 3%到 17%不等。然而，一旦被招募，在多个时间点完成调查的幸存者比例相对较高，从 48%到 91%不等。
通过纵向收集 PGHD 来补充癌症登记处的数据是可行的，尽管需要做更多的工作来克服初始患者招募的障碍，并采用在线 PGHD 收集技术进行公共卫生监测。
包括 PGHD 在内的登记处数据可以为医学界提供关于治疗效果和生活质量的患者观点，并为癌症幸存者提供有关症状管理和研究进展的信息。
